The Voices of MED13L

"The Voices of MED13L" is a podcast dedicated to raising awareness, sharing stories, and building community around MED13L syndrome—a rare genetic disorder that affects development and communication. Each episode highlights the voices of families, experts, and advocates working to understand and navigate life with MED13L. From personal journeys and medical insights to educational tools and research updates, the podcast offers hope, support, and connection for anyone impacted by this rare condition. Whether you're a parent, professional, or simply curious, "The Voices of MED13L" is a space to listen, learn, and stand together in the face of the unknown.

Visit us at www.med13l.org

X: @med13l_fdn

Guest

Belen Fernandez Crespo

Belén Fernández Crespo is the mother of Nacho, who lives with MED13L syndrome. Her personal experience has deeply shaped her commitment to raising awareness of disability and rare diseases, and to the importance of research and inclusion.

She is a doctoral researcher in English Literary Studies at the Universidad Complutense de Madrid. Her work focuses on how contemporary Anglophone women poets challenge the traditional representation of illness, grief, and suffering.

Alongside her academic work, Belén is also a writer and has authored several novels that seek to bring visibility to the experiences of children with diverse abilities.

For Belén, storytelling and research are powerful tools for creating understanding and for building a more inclusive world for people with disabilities and their families.

Guest appearance on:

Growing Up With MED13L: Life at 18